The pandemic has been a time of tremendous change and upheaval for me. As previously posted, I have CLL, which is a form of blood cancer that is incurable. However, with treatment and monitoring I am expected to live at least 20 years since diagnosis (at 42), hopefully more. New treatments are coming through all the time, two since I was diagnosed and one of which I am on now! It’s unknown, so I’m assuming I will have a ‘normal’ lifespan and acting accordingly.
Before the pandemic, I had been working for a firm of solicitors as Legal Secretary for over 19 years, and had spent 10 of those years as a qualified Specialist Paralegal fee-earning for them with clients in Wills, Probate Administration, and Powers of Attorney.
Boom, pandemic. I went into hibernation shielding on 15th March 2020. I have not been released yet; it will be two years of shielding soon and I’m thinking of a having a party of one. Two if I let my husband attend. Three with the cat. I was due to start chemoimmunotherapy in that month, having already had bone biopsies and aspiration of bone marrow in January 2020. It was delayed, and I eventually started treatment in June 2021. I finish in June 2022.
Blood cancer, especially my kind which is chronic and incurable and means I have a very compromised immune system even when not in treatment and also means the vaccine has very reduced if any efficacy, means a very high risk of death from any covid infection.
There was legal protection whilst the furlough scheme was in effect. However, my firm was being subsumed by another as the partners were retiring, and in April of 2021, when I was working 20+ hours per week from home, the firm switched. From that point, I was excluded from being able to work. I have not been to an office since. I have not seen the work colleagues I spent so many years working closely with. It was a small firm, only 8 of us. I did not realise when I went into shielding that that would be the end of my working life in an office.
One case through ACAS later, which I won, and it is accepted by the DWP that I am no longer able to work outside the home safely. No job interviews for me. I am hampered by the pandemic and the disabilities I have, which whilst no employer will outwardly say so, puts me at the bottom of any prospective firm’s wish-list in the job market.
I have even been advised by HR to lie about my health to get in through the door, as if they’d never heard of probationary periods. I spent six months of last year trying to be heard, only to have professionals talk over and around me and make decisions for me without any consultation at all. I was completely open with them. They were not. I had a mini-stroke from the stress. There is a reason I won the case.
So, I made a new year’s resolution. I have many skills, I have a brain, I can work from home (as proven by the 11 months I did so successfully whilst on furlough), and furthermore there are a lot of people out there who do not want their blood relations to have rights over them and their estate when they die. There are many people in non-legally recognised forms of relationships who need to have their chosen family covered in the event of their death or ill-health.
It feels a bit like a calling. I know though that if the transfer to the new firm had worked then I would still be with them, working from home. The security of a wage has always been extremely important to me. It has taken a mini-stroke and therapy to get me to this point.
Now I could not be more excited about my new business. All Inclusive Wills, named by my mum when I told my parents what I was going to do and who I intended to help first. My options may be limited, but I am so excited about this one it doesn’t matter.
I know I have the relevant expertise. I have systems in place to ensure continuing professional development courses are accessed. I have business cards, a website, precedent documents ready to go. I love the job of creating the legal documents and seeing the relaxation of my clients when they know their wishes are met and their loved ones safe.
It launches on 6th April 2022. Watch this space!
Brian Barnes, a Kent-based artist and mural painter, passed away on 28th December 2021. For around 12 years I lived in Sanford Housing Coop, which features the final political mural that Mr Barnes created, “Riders of the Apocalypse”, in 1984*. In this blog, I’m calling it ROTA.
This image brings forth such a mix of emotions I’m finding myself sitting here entranced by the power of a captured single moment in time igniting memories and emotions stored and filed away over many years. 12 years of ROTA being my lighthouse beacon of home, the marker by which I directed visitors to know they had arrived, a reflection of my principles and knowledge that my neighbours, my community, was similar in how we wished to see people housed and cared for.
A still picture can evoke myriad emotions and whisk you to a long-forgotten place or person. It is time-travel in two dimensions.
I became a bit of a joke (kindly meant and true) for always taking photographs everywhere I went. I have thousands dating from when I started with a trusty click-and-wind as a young teenager. I was very into photo-stories (side-eyes Jackie, Patches and Blue Jeans) but I’m now all about the digital age.
The image I take says more about me and who I was and have become that the captured moment depicts. People I’ve lost touch with, experiences and emotions I felt, pain and joy, all are there.
The advent of the camera-phone is a blessing and a curse. I no longer take the time I did in ensuring the moment I click the button what I want to see is memorialised. That click is not actually needed in digital photography. The sound is so evocative to us it is part of the experience now.
I can take many pictures and edit them. I no longer print them because I can save them to an x-drive. I get a calendar made with photos from the previous year; there is still something about flipping through pages or seeing the printed image that has the tactile link a screen cannot deliver.
An image can change ideas, beliefs, states of mind, emotions. It is propaganda, it is what the creator wants us to see. Our reactions come from outside the experience of the creator. The image is created with meaning, however frothy the intent might be, but the perception will never be exactly as intended. An image is so much more than what the eye immediately perceives. It is a doorway to a personal journey which awakens all the senses. The power of an image is great indeed.
*Interview with Brian Barnes, by The London Mural Society
I am about to start week 3 of the first cycle of my cancer treatment. I am receiving immunotherapy, which is basically the same as chemotherapy except that for chemo you are bombarded with a treatment which is not targeted and destroys good and bad cells, whereas immunotherapy is more targeted, acting on the specific t- and b-cells which are causing my particular form of leukaemia. Think more laser-sighted rifle than machine gun. Think also that most of my blood consists of bad cells. I am quite the internal battleground.
My treatment a complicated regime involving two different drugs, one infused through IV and one in tablet form. The IV is for six months (cycles 1 to 6 inclusive) and the medication is for a year (end of cycle 1 to cycle 12 inclusive). It involves up to six trips to and from the hospital in the first month, down to two a week from the third cycle; I have a calendar and am still confused. After the 12th cycle ends it is hoped my leukaemia will have improved to the point that I will once again enter the active monitoring (watch and wait) phase. My cancer does not go into remission, it just resets and starts its journey again.
Treatment is made more dangerous for me, and more difficult to navigate, because of Covid. More specifically, because of the confusing, selfish messaging that the United Kingdom has been given, together with the idea that somehow personal freedom to be all about oneself is more important than acknowledging and supporting the fact we live in communities and affect many people every day in our interactions, however small they may be.
Yesterday the UK government announced it is shortly going to be relaxing the rules that it had not been enforcing anyway, and it was hoped everything would be returning to “normal”. This new Step 4 regime starts on 19th July 2021 as England moves out of lockdown. However, as the document itself says, the final decision will be made on 12th July 2021, so that could all change again. The devolved governments of Scotland, Northern Ireland and Wales will have their own procedures for dealing with the pandemic.
Consistent, clear, updating advice. It must be nice to have a government that provides that… *side-eyes New Zealand*. I strongly recommend you read the link to what will be expected of you, as it is now all down to personal responsibility and everyone caring about the other people with whom you share an environment.
At present I have absolutely no immune system whatsoever. Nix, nada, zero, zip, zilch, nothing. I have a mune system, being the exact inverse opposite of im. I am literally an ex-vaxxer because it worked for two weeks and now treatment has removed all trace of antibody protection. I’ve levelled up on medication pots and have yet to be prescribed the tablet section of my treatment.
I’ve come to terms with the fact I will be shielding indefinitely yet it is still possible I may be out mid-2022. Who knows? I am vulnerable to every infection now, and highly susceptible to sepsis should I get an infection. The pandemic simply makes it easier for me to decide to stay inside. It’s not really a choice, as I want to live. If I didn’t, I wouldn’t be having my cancer treatment. Unfortunately because I do want to live I have to spend a considerable time just existing.
Will society suddenly realise that it is not quite ready to ditch the masks? That distancing is quite a good idea really? That the NHS needs help so the fewer the infections, the better the healthcare system? That their neighbour who they have never spoke too might still carry covid or become ill, and it only takes one cough/sneeze/touch-contact to hurt a vulnerable person? That the children are being released into normality just before the school summer holidays so parents are likely to be stuck at home with potential biohazards running around the place?
At this point it doesn’t really matter if society does a complete 180 and starts taking it seriously; the fact is I can’t trust people to do so. Like with any prejudice, because it is a prejudice to presume that those with disabilities/conditions should be treated differently/hidden away/excluded from access to living with self-determination, I don’t know who the person is who will hurt me until I have been hurt.
I am living through a pandemic and I am living through treatment for cancer. Next year I plan on living just for me. On the plus side, I have a treatment room with a view.
I’ve informed all the family and friends I could get hold of so now it’s time to blog (which they have all be notified I will be doing the heck out of for the foreseeable so are prewarned). It’s time to let both my readers know (presumptuous to assume they are not already informed via the above, I know).
My cancer (CLL) has reached the point where it has to be treated. I’ve more symptoms and my blood counts are not going in the right way nor at the right speed. So, on Wednesday 23rd June in this Our Second Year of the Pandemic (or 2021 if you prefer) I will be commencing a 12-month course of treatment which, by the end of it, should have all my blood counts back to near-normal and other symptoms disappeared.
The initial appointment is on 16th June (five days from writing this) at which all the consents will be signed and timings worked out, ready for the actual treatment to start on the aforementioned date. I will be having a treatment known as Venetoclax + Obinutuzumab. I have yet to be able to pronounce the last one properly until the third attempt at trying.
Neither of these drugs are a form of chemotherapy, instead they are an immunotherapy. However, in the way may treatment will be dispensed and in terms of potential side effects, it is pretty much the same thing. As far as I can tell, the only difference is that the drugs I will be on are more targeted to specific cells whereas chemo is more of an untargeted treatment. At present I am ignoring whatever potential side effects I might have, as I cannot know in advance what I will get so I am concentrating on what I do know will happen, not what might.
My first treatment day will involve a blood test at 8am, then four hours on an IV drip having Obinutuzumab transfused into me, then another blood test and hopefully home, unless signs indicate that I should be admitted overnight. For the first week (cycle 1 is the first to fourth week, then cycle 2 all the way to cycle 12) I will get a transfusion the next day as well.
Weeks two and three, once a week infusion, with the possibility of an overnight hospital stay for each, won’t know until it happens. I’m assuming it won’t. I have been warned it will be intensely boring; thank goodness for e-books.
Week four, onto the Venetoclax which is an oral tablet medication given at an initially low milligram dosage and is then slowly raised over the next four weeks to a clinical dose. This dose will then be a taken every day at the same time for a year.
In the meantime I will be having Obinutuzumab once a month from week five until week 26. After that the Obinutuzumab will stop and I will be on Venetoclax without Obinutuzumab for the next 26 weeks.
Confused? Now factor in blood tests once a week on different days to the treatment days, as well as on the treatment days, every week for a year. It was a really daunting schedule to hear about and it didn’t really sink in at the last meeting with my consultant. For the first month I may be going to hospital six times a week, two or three times in one day.
Luckily the hospital sent a full list of treatment days which I have now gone through and entered the exact dates upon. Also, I highlighted hospital dates in yellow. I may decorate it, I don’t know. It’s going to run my life for a year, so I feel I should do something special with the seven pages of typed instructions!
I am also so lucky to have a partner whose workplace is incredibly supportive and who are doing their best to ensure Sooterkin™ can drive me to and from the hospital, and a wonderful friend Plaster™ who has offered their services when Sooterkin can’t make it. There is hospital transport, MacMillan specialist counselling, nursing support, and aid with finances; there is so much out there that I will be accessing to help me and my support network get through these next few months. I remain furloughed from work until the scheme ends in September, and as I cannot work from home (which is a whole other saga) I’m not sure what happens after that. I’m concentrating on July and August before I get to September, so that can wait a bit.
It is one heck of a commitment treatment-wise, is the most intrusive, and demands the most initial time commitment for any first-line treatment that is offered for CLL. It is very effective and will get me back to normal-as-I-ever-was, but still living with CLL.
CLL is incurable and we never enter a remission which may lead to an all-clear. We only ever get our conditions back down to active monitoring (which is watch and wait, i.e. regular blood tests to see how you are going and check-ups with the specialist). The important thing is that we can recover to a point where normal lives can be resumed and the merry-go-round begins again.
Unfortunately, because this is Our Second Year of the Pandemic, living with CLL has changed. It is an immunity-squishing form of blood cancer and we remain clinically extremely vulnerable. It’s why my treatment was put off since my bone marrow aspiration/biopsy and CT scan in January 2020, which thankfully is not being redone. My worsening condition is why treatment is happening now. I have to remain in shielding, even stricter than I have been, until at least January 2022. It’s hard to know, probably longer, but it all depends on factors outside my control and in whom I do not have much faith (*coughUKGovernmentcough*) so there is no point in worrying about it yet. Just like those potential side effects that I might or might not have.
Here is what I do know:
- I’m starting treatment on 23rd June 2021.
- It’s time-consuming and I have the calendar to prove it!
- This time next year
we’ll be millionnaires RoddersI’ll be in much better health.
That’s all I really need to know, for now. I’ll let what happens, happen and deal with it then.
Image description: close up of a hamster smiling with two thumbs up, with the words “practicing positive thinking” in white capital letters over the top and bottom of the image.
It’s been well over four months since I posted a blog. That is the longest period I have gone without writing. This is because I had what is called a T.I.A. (basically a mini-stroke) on 12th September 2021, along with a bad seizure and several days in hospital under sedation. My short-term memory is now a sieve, although should recover over time. I forget words, cannot remember conversations and events, tire very easily after conversation, and have not been able to write. For a while, I couldn’t read as I would forget what the previous pages had said. Luckily, that ability has now come back to me. I never lost the ability to type (all hail muscle memory!).
So now I have another physical problem which disables me within the social rules of UK society. Having chemo for an incurable leukaemia during a pandemic, living with chronic pain from osteoarthritis, and living with epilepsy, JLL, PCOS, Depression and Sciatica wasn’t enough, clearly. I needed to add Hypertension and a brain injury to the list.
I’ve been disabled according to the definition given by society since I was 11 years old, although due to luck more than anything was not visibly disabled until I was 31, and that is a real privilege I can assure you, both in terms of disability presentation and gender. No-one is more invisible as a sexual and social being that a visibly disabled person, although I retain the privilege accorded my white skin tone, and still present as cisgender despite me recognising I am in fact gender fluid.
If you want to know more about living with disability both now and in the past, it is UK Disability History Month (I know, the image earlier was a bit of a hint!); click on the blue highlighted words in this paragraph to learn more.
Every condition that I am living with is shared by other people and could happen to anyone. Some of the conditions have effects that are invisible. That does not mean they are not disabling.
However, this pandemic has made it abundantly clear that the vast majority of people in society simply see disabled people as problems to be dealt with; as ‘other’. I call bullshit.
Never forget that just because a person has a disability, or maybe several, or a condition or two that requires additional thought and action from those without those conditions, does not mean they are worth less that a person who lives without any disability or condition. We are propagandised into believing a person’s value is tied to their financial status. This is rubbish. we would certainly notice the loss of cleaners and nurses, and dustbin operatives, far sooner than a lack of stockbrokers or lawyers, or even paralegals (of which I am one). Yet the earnings would tell us otherwise. Nor does the fact a person is living with a condition or disability prevent them from undertaking almost any job. It varies according to the individual. Unfortunately, the individual is seen as a physical entity over any other ‘qualification’ and that is where the ableism, the disability discrimination, comes in.
Society needs to change its thinking right now. People are dying as a result of this abled-bodied privilege right now as a result of poverty and lack of compassion. I see posts on social media proclaiming that we are all right because it is only the vulnerable who need to worry. As one of the vulnerable, I am hurt beyond measure when I read that. It’s okay because it is only people like me who are dying.
Refusing to be vaccinated or wear a mask is an individualistic way of living one’s life (I exclude those who cannot do either for their own medical reasons and do not need to know those reasons; I do need to know their status though as mine is “I will very probably die if I get Covid”). I believe society must evolve into a socialistic model. We need to always carry with us how our actions and words both affect and effect those around us.
I am disabled but it is society which is disabling me. I would not wish anyone to go through the experiences I have had and will have in the future. I hope that within my lifetime society evolves, and compassion becomes the priority instead of individual economic status when making choices in life.
Being disabled by society really sucks.
Wikipedia: the first case relating to the ongoing COVID-19 pandemic in London, England, was confirmed on 12 February 2020 in a woman who had recently arrived from China. By mid-March, there had been almost 500 confirmed cases in the city, and 23 deaths; a month later, the number of deaths had topped 4,000.
UK – 20th May 2021: there have been 4,452,527 diagnoses and 127,694 people have died. 20,870,453 have received both vaccination doses. It is not known how well the vaccines are performing yet.
It’s 21st May, 433 (inclusive) days since I started shielding and there is no end in sight based on one simple reason – I have blood cancer. Mine is a chronic (meaning with me for life) rather than acute (meaning needing immediate treatment) form of blood cancer and will be with me until I die. Indeed I may not die from the cancer (no-one knows nor can predict that); most CLL patients are diagnosed in their late 60s, I was 42. Some people are younger than that. Some live short lives, some 30 years plus. Chronic Lymphocytic Leukaemia is diagnosed with the words “this is the cancer you will live with, not die from” issuing from the specialists’ mouths. My first consultant told me that I would live for up to ten years. I have a different consultant now but hearing a potential 10-year life span as the average life span at the age of 42 is terrifying. I learned not to read the statistics on CLL after a while.
Times have changed. From being a cancer that you took calculated risks which were reasonably minimal with regard to ordinary infections, CLL has become one of the most dangerous to be living with in these pandemic times. CLL means I have a very compromised immune system.
This is how I lived with CLL pre-pandemic:
- regular blood tests followed by scheduled visits to the Specialist at hospital,
- getting the annual flu jab and five-yearly pneumonia jab,
- contacting the specialist/GP upon feeling unwell in any way,
- regularly taking my temperature,
- checking lymph node size and shape,
- three hospitalisations so far, all with chest infections,
- awareness of hygiene knowing any infection through any type of cut could rapidly develop into sepsis,
- avoiding children who have been recently vaccinated with any ‘live’ virus (most of them are ‘live’ viruses-see image) for at least two weeks (no covid vaccine is ‘live’),
- avoiding anyone who is ill or thinks they might be,
- monitoring for other symptoms such as drenching night sweats, bone pain and fatigue,
- maintaining awareness of those around me at all times,
- I had to quit swimming (I was a 3-mile-a-weeker just a decade ago) as it gave me chest infections (see above).
I’ve also been told I am in imminent need of treatment since October 2019, but the pandemic meant many treatments were delayed and mine in particular as it was more dangerous for me in the hospital than to receive treatment for my cancer. Visiting the hospital for consultations is too dangerous so being treated was and still is more so. The vast majority of people with CLL have not been able to have meetings with their consultants face-to-face to monitor their conditions for over a year.
At every appointment for 18 months I have been told over the phone that treatment will be put it off a bit more as it still isn’t safe yet. It’s 16 months since I had the preparatory bone marrow biopsy and aspiration and the CT scans on my lymph nodes and enlarged spleen. Thankfully, staying shielding means I am not exposed to the everyday infections that most people wouldn’t even notice as their immune systems work. Shielding has helped me postpone the treatment and maintain a level of health that without the pandemic I would not have had. The irony is very much not lost on me.
My ongoing normal is to stay away from people. I live in a city, so that means shielding, with any venture outside being an internal discussion weighing up risks to physical health against the benefit to mental health. The risks, of course, keep changing. We now have another variant, apparently even more dangerous than the previous variants. Lockdown has ended but yet another wave is expected. I’m safest indoors.
I’ve seen my parents once, because they shielded for days before I visited. I’ve seen friends at a distance, because they take covid-19 tests before they see me. I have very occasionally allowed risk to enter my home, prioritising my mental health and friends over my physical health and life. I don’t see any friends that have children or are around children, or that aren’t tested, or that I have to travel to see, because I cannot guarantee they are safe for me to meet. I have to rely on what people are telling me about their own days and the risks they may have taken in order to make choices about interacting that could, if I’m wrong, lead to infection and potential long-covid problems or death.
I’ve unshielded occasionally for the sake of my mental health. Each time is a risk-assessment and trust exercise. Shielding is strongly advised by government but is voluntary, and support for workers furloughed ends in September. The pressures on me to unshield are immense, internally and externally. I’m having to pay attention to statistics again. My CLL is no longer one to live with, it is one that is preventing me from living in the way I used to. My activism, volunteering, work, and social lives are now only available through a laptop screen. I am privileged however to be able to shield; I have a supportive workplace, and supportive partner, family and friends. I don’t live alone.
The reason I do not see an end to needing to shield is because, for me, nothing is changing. COVID-19 is still around, there is another new variant, and the known risks have remained the same or worsened for people like me. I used to think I wasn’t rare, that if I had this combination of conditions and pandemic and environmental risk, then so must many others. I’ve come to realise I am the only person I actually know of still in the position of having to shield. I’m a bit more original than I realised. CLL has changed my life in a way not even the specialists could see coming. Living with CLL has been redefined and what constitutes my life has changed profoundly. My new normal is very different to anyone else I know. It’s a lonely position to be in, but thanks to friends and family and the world wide web (all hail Sir Tim Berners-Lee) at least I’m not alone.
Have some statistics as of 20th May 2021, all part of evaluating my position and constantly updating:
Cases in [the borough in which I live] – source: https://coronavirus.data.gov.uk
1 confirmed case is someone who has tested positive for coronavirus.
8 new people had a confirmed positive test result reported on 19 May 2021.
Between 13 May 2021 and 19 May 2021, 61 people had a confirmed positive test result. This shows an increase of 48.8% compared to the previous 7 days.
Vaccinations in [my borough]
Vaccines are currently given in 2 doses, at least 21 days apart.
121,772 people had been given a first dose by the end of 18 May 2021.
61,251 people had been given a second dose by the end of 18 May 2021.
Healthcare in (my local) NHS Trust
Some people with coronavirus have to go into hospital.
0 people with coronavirus went into hospital on 9 May 2021.
Between 3 May 2021 and 9 May 2021, 6 went into hospital with coronavirus. This shows an increase of 200.0% compared to the previous 7 days.
There were 4 patients in hospital with coronavirus on 11 May 2021.
Statistics for clinically extremely vulnerable (CEV – that’s me) people will be released by the ONS (Office of National Statistics) on 8th June 2021. This is all they can say at present:
Clinically extremely vulnerable – People who are identified as clinically extremely vulnerable (CEV) are at very high risk of severe illness from the coronavirus (COVID-19). Up to 16 February 2021, CEV people were identified either because of a pre-existing condition or based on the clinical judgement of their clinician or GP that they are at higher risk of serious illness if they catch COVID-19. From 16 February 2021, individuals can still be identified as CEV by these routes, but also by COVID-19 population risk assessment.
The most up-to-date but very small study from the United States (Sloan Kettering: Dr. Anthony Amato, et al, pub. 13 May 2021) – bold highlight by me:
“In this study, we found that only half of vaccinated patients with CLL develop detectable anti-SARS-CoV-2 S1/S2 antibodies. Furthermore, we found a significant difference between rates of detectable anti-SARS-CoV-2 S1/S2 antibodies between treatment-naïve patients (17/18, 94%) and those who had received CLL directed therapy (6/26, 23%). These striking findings suggest that vaccination in patients with CLL may not confer the efficacy that we expect in the general population, particularly in patients receiving CLL-directed therapy. … specific guidance for patients with CLL are warranted as the current Center for Disease Control and Prevention recommendations regarding relaxed personal protective equipment use when around other vaccinated people may not apply to this population [24]. Without consistent antibody responses, patients with CLL should continue to exercise extreme caution following vaccination until further data on clinical efficacy are available.”
Was it really only last August when I, in my already failing desire to get back to work amidst the sound and fury of whatever was happening on the outside because I had been shielding for seven months by then, bought this absolute beauty of a three-wheeled motorbike?
This pandemic means it is no longer safe for me to use public transport, because of my CLL I have to commute to work and it took two buses, or one bus and a train, to get there. Alternate travel arrangements were required, and at the time although I was expecting the second lockdown I still wanted to plan for a possible return. I sought a three-wheeler for extra stability as bouts of chronic pain are not predictable. I spent many hours researching reviews, website reviews, gathering information and had actually looked at this type of bike six years earlier when the idea first came up. I bought the Piaggio MP3 as it can be driven on a car licence, which I already had. However, when it was delivered looking a bit different than the photo (actually an upgrade for the same price) I took one look at it and knew I needed bike lessons. This gorgeous bike is to be ridden, not driven.
I booked a class that stated it was for beginners and was run by professionals. It certainly was the latter, but not the former. We had an hour of road safety and were expected to be riding on the roads by lunchtime. This was not indicated when I booked the lesson nor was it in the information online about the class. It may have been set as I was the only beginner there, all the others were retaking their CBT. It was clear when I walked in they weren’t happy a total noob was there (only woman too, as although I identify as gender fluid, this is not how I am perceived). I was intimidated, nervous, and being repeatedly told that the use of the handlebars is intuitive. After a brief “how to turn the bike on”, how to brake and how to turn (apparently, this will be intuitive too, just turn from the waist). Guess what, neither was intuitive and I was unable to turn the tight circle they had laid out after 20 metres of straight track, and I crashed into the metal fence at 90 degrees, coming off the bike with my left leg under it and ripping the engine off the front of the bike. Thank goodness I was very slow.
This was two hours into the day long lesson. I was shaking and tearing up, and feeling the onset of great pain, and I felt humiliated. I was told by the course leader to go learn to ride a bicycle first before I came back.
I fully intended to book another course with another provider recommended to me by my friend Worksub (who will know why I’ve called her that but I don’t think she is one of my two readers). I was not going to let that terrible experience stop me learning. I’d always wanted to ride a bike, but when my Clone™ was learning at 18, I had only been seizure-free for six months, so by the time I could legally learn to drive I was already living in the Big Smoke away from home at Uni. I didn’t learn to drive until I was in my 30s and that’s only because family keep moving far away from me (hmmm…).
But time moved on and winter came, which showed me very clearly how my body reacts to the cold and that the idea that I, a person with chronic fatigue, chronic pain, and immunosuppression combined, would be taking an unnecessary and unwise risk to ride a bike through London traffic even for just the three mile each way commute. I cannot lift the bike if it falls. I struggle to get it off the kickstand. The weight of the safety gear I have is significant and could easily trigger pain. I have to look at these potential problems and work out if there could be a balance or method put in place to enable safe riding. I would not have know about these specifics if I had not bought the bike, all the safety gear and bike security, and tried a lesson.
This has been a very hard decision to come to, partly because it was a significant expense for which I received a lot of generous help, but mostly because I have always wanted a bike. My Twinnie™ (aka Clone™) had one, my dad had one, my mum used to steal Clone’s so dad could teach her how to ride), I have friends who love the freedom that a bike or scooter can give them. It would have given me freedom too, to leave my flat safely during this pandemic, and all the positive thinking and therapeutical practices are not going to stop the feeling that I’ve been inside for fourteen months and it is going to be many more months before I can be truly comfortable in situations where I may even just pass a stranger walking down the street. Even longer if they aren’t wearing a mask.
I have to put the safety of myself and other road users first. The bike must go and I shall then need to get a small, city-suitable car. My environmental head is screaming at me, but that is the ableist in me shouting (I’m ingrained with it as much as anyone, despite my disabilities/conditions). I never wanted to be a two-car household, but m’Sooterkin™ also has to drive as he works in the middle of nowhere. I cannot for the sake of my health use public transport, I cannot because of my health safely ride a bicycle. I’m left with the choice of never returning to my job or getting a car. I’m going to take the purchase decision very slowly this time; I know I am in shielding for at least another two months. On the plus side, I can already drive whatever I finally get!
The biker dream is not going to happen. It’s another dream that needs to be laid to rest. Sometimes dreams are outgrown and all the trying in the world simply isn’t going to work. I know I’ve made the right decision and I’m choosing to believe that just means the right dream will find me another way. Or maybe the dream is just being able to get back to work, however I manage to do it.
I have now been shielding for ten months and one week. Not that I’m counting of course*cough315dayscough*, nor am I having to tick days off on a calendar just so I know what the day and date is. My hair is getting a life of its own, and I’m considering contacting Hagrid for a DNA test. I have dip-dyed hair colouring completely by accident. I don’t have to think about how I present to anyone and that’s very relaxing.
For the last month or so I have been feeling quite positive about my shielding experience. It is important to me to try and find the positives, to boost my mental health. So, as a lover of a good list, I made one. A list that is, I make no value judgement about its goodness:
- My CLL has improved.
- My pain levels are easier to manage.
- I can plan my life much better as there is little to plan.
- I am not letting anyone down by cancelling arrangements last minute.
- I don’t have to reject invites as I’m not allowed to accept any.
- I’ve benefitted and been humbled by so much kindness towards me.
- I’ve seen online shows and comedy I would not otherwise have been able to see.
- I’ve not had to worry about accessibility at all (for my osteoarthritis ).
- Despite not liking phone calls, I’ve made more than ever before, just to keep in touch.
- Introspection has led to positive breakthroughs for me.
That last one has had a profound effect on my mental health in a very beneficial way, see this blog.
The first one on that list was the biggest surprise. I have chronic lymphocytic leukaemia , and since October 2019 I have been told that my condition was very close to needing treatment to reduce lymph nodes and spleen swelling, reduce the white blood cell count and raise the haemoglobin. However, in January 2020 a new virus was starting to become known, and by 15th March I was in shielding. At that point my white blood cell count was 293. I was referred to a trial ending at the end of 2020 in the hopes that my treatment would be one of the new drugs being tested; there were already many positive results available for review by medical specialists in utilising the treatment.
At my first appointment in September it was made clear to me that my suspicions had been correct and the treatment was in part to be delayed because of the pandemic. Partly the overloaded NHS cannot cope, and partly because of the holistic view of my condition and my being shielding. It was clear by September that the pandemic was into a second phase (third now…) and there was a lot more for a specialist to consider deciding to go ahead with treating me. At this point I had taken myself into psychotherapy as I was not coping with the situation I was in.
By November 2020 my white blood cell count was 209 and all other counts had stabilised. The only thing that is different about my environment is that it is currently limited to being indoors at home. I assume the fact I am not being exposed to the everyday germs and pollutants that living in a city brings is the reason why, and in conversation with my specialists, so do they. I am not cured, but it means that my treatment can safely be delayed. The trial I was referred to has finished, but there may be a new one in November utilising a newer treatment which has fantastic results for my particular presentation of CLL. In case you are wondering how I know that, it’s because the US already has all these drugs available in its private healthcare system, and the EU has fantastic results from their tests too. We now have to do our own tests as we are not part of the EU so cannot licence those drugs without undergoing our own stringent testing too. However, we can know what the results are likely to be.
With CLL, it is the case that the longer treatment can be delayed, the better. It is a chronic condition so I can never be cured or go into remission as the term is understood with acute cancers. My condition can improve to the point it is almost undetectable, but I will always require constant monitoring. Most importantly, once you have undergone a treatment protocol, you cannot repeat it. The more types of treatment, the better. As I am considered very young to have been diagnosed with the condition (average age is in over 60s and I was 42, most diagnosed are AMAB (assigned male at birth) and I’m AFAB (assigned female at birth), there is a possibility that if I am treated too soon I may run out of forms of treatment to have. On the other hand, I may not. I’d rather play the long game and put off the treatment as long as I can!
Shielding has saved my life simply by protecting me from the covid virus. It may also be saving my life by helping my body deal with my leukaemia and delaying my need for treatment. Who knew that 10 months inside and counting would be such a positive thing for me?!
I keep writing blogs about this topic and not publishing or deleting once published, for what I like to think of as a variety of reasons, but ultimately it’s just one. Fear. I made very tentative steps early in the pandemic which resulted in a loss of friends, although it blew up so quickly I didn’t get a chance to define “gender struggles” and they don’t know the true impact of their words. I am sure if they ever read this blog it would be a shock to them.
[image description – photo of a crowd of people of all shapes, abilities and sizes, all silhouettes ]
Then there is also my personal experience of advocating for my friends under transgender umbrella (which is inclusive of non-binary, gender fluid, non-conforming, agender and many more identities). It has met with prejudice and ignorance from people I know to be loving. My fear of rejection grew. I could fight for others but could not even recognise let alone fight for myself.
I was also fighting my own ingrained transphobia, which we all carry with us, no matter who we are. I thought transition might be necessary, until I read further and experienced testimonials from others that I realised it was about my own identity, not the identity which is imposed on me.
It was only when I read the wonderful book “Disability Visibility” curated by Alice Wong that the thunderbolt hit me and my truth was confirmed to me. I stopped doubting myself; I have had dysphoria for years since developing epilepsy age 12 almost to the day that I also started puberty. The two were entwined from the outset, and as I have got older I have had more diagnoses of different conditions which create a disabling effect with regard to enabling me to engage fully in society. That’s the difference, as far as I am concerned. Some are disabled by society, some are enabled. There is no abled.
I have always identified myself as cisgender as I am AFAB (assigned female at birth) and I assumed the entirety of my body dysmorphia was due to my myriad chronic and disabling conditions. However, looking back, I see my history. I first identified as gender non-conforming on Facebook about seven years ago but changed it back not long after as I did not want to be seen as appropriating a term; I was still confused. I joined groups, I researched, I’ve been an intersectional feminist for as long as I have been an activist, so I did this at first as an attempt to be an ally. The more I understood the more I enlightened myself and the more I realised that, actually, this is me. My cisgender identity was something I thought I was because I didn’t know myself well enough yet.
When I admitted that truth to myself all I felt was a tremendous sense of relief. A burden of performative womanhood was lifted, a burden I didn’t even realise I was carrying. I held up so many barriers to my true self – it’s my disabling/chronic conditions, it’s my shame of self, it’s my rejection of my body, I’m too old, I’m appropriating, I’m an identical twin, I’ve spent years fighting to be accepted as a woman on equal terms (despite never believing in the gender binary), I’m a tomboy, I just prefer trousers, and even then I was still conforming to the gender role I believed I inhabited.
Through joining groups and talking to people I’ve learned my experience is not uncommon. So many older people are struggling with this, with the years of indoctrination which hid their identity from themselves.
So now I do know, I am gender fluid. Sometimes I feel masculine, sometimes feminine. Sometimes I am not a woman, but I am not a man. I am AFAB but I am not cisgender. I’ve lived nearly half (hopefully) of my life performing a role so strongly that I didn’t even realise I was doing it.
This is not something I come to lightly. It has been years in the realisation. I’ve been wanting to open up for many months and have not felt able to, but now feels the right time. All that changes is my own identity, and my pronouns are now she/they. I would prefer they (for everyone) but am okay with she, as it is a big change for all who know me. This is not about how I am defined by others, which let to my cisgender definition. This is about how I define myself. I am gender fluid, I am she/they, and I am still the same person you have always known.
To all my readers (both of you) please be kind if commenting; this blog has been a long time coming. Years, in hindsight. I am still fearful but I am finally living my truth and that feels very good. This is me. I know it, and that is really all that matters.
More information:
UK
Home
https://genderkit.org.uk/organisations/
https://www.beaumontsociety.org.uk/transgender-organisations.html
https://www.nhs.uk/live-well/healthy-body/how-to-find-an-nhs-gender-identity-clinic/
USA
https://www.glaad.org/transgender/resources
Global
https://globalresourcesreport.org/
https://www.verywellmind.com/best-online-transgender-support-groups-4800840
Glossary of Gender and Sexuality terminology:
http://thepbhscloset.weebly.com/a-list-of-genders–sexualities-and-their-definitions.html
The nature of Chronic Lymphocytic Leukaemia is that it is a build-up of varying symptoms which eventually lead to a form of treatment, whereafter ideally one’s bloods and symptoms return to close to normal and then the whole roller-coaster starts again. The term remission is used for this period, but unlike other cancers, this remission will never lead to being cured. All it does is start the “active monitoring” AKA Watch & Wait, Active Surveillance or Watchful Waiting) phase again. I have been told for 11 months that treatment was imminent.
I have been referred to another Specialist who is running the new trials for upcoming forms of treatment, who I had been informed would determine which form of treatment I would be put on. After a year of “imminent” the surety was welcome and I was looking forward to the appointment.
After the meeting with the Specialist, having 12 test tubes of blood taken (I said they could have six extra to store in the tissue bank for medical testing/experimentation in order to help uncover future forms of treatment), and having sat around for two hours which did not do any favours for my chronic pain, I left the hospital. I promptly burst into panicked and heaving tears in the car ride home. My new Specialist, who was Registrar under my former Specialist, has now stated that he may not put me forward for treatment yet. It’s all up in the air again.
You may be reading this thinking, hang on a minute, she doesn’t need chemo straight away, what’s so bad about that? That is good news, surely? I understand that reaction, it is what my employers said to me. But that response doesn’t comprehend the mental preparation it takes to accept chemotherapy will be required and the fear of an uncertain future that cannot be planned when there is no firm course of treatment in place and the advice keeps changing from one hospital visit to the next.
Imagine you have been told that you will be needing chemotherapy, imminently, for 11 months. Imagine a pandemic happened which put your chemotherapy treatment off, not because it wasn’t needed but because it was too dangerous to give during the pandemic. Now imagine that after 11 months this advice is turned on its head and you are told that said treatment is required but that it will be delayed. Not yet, the Specialist says. Not yet, we must do more testing, you are young, and we don’t want you to start treatment if we can at all in any way delay it. Imagine the confusion this causes. Imagine never being able to plan more than the next appointment, four weeks, ahead. Imagine being told this whilst the pandemic is again worsening and we head towards winter, with its increase in colds, influenza and other transmittable diseases. Imagine knowing from experience how vulnerable you are to such things, and not knowing if you can get your usual vaccinations because you don’t know what or when chemotherapy may be advised. Imagine feeling the only safe space is shielded in your house, potentially for years. It’s been seven months already.
One of the side effects of my shifting situation and changing medical advice is that I am left feeling like everyone I have spoken to about my condition and the situation will see me as a liar. I’ve been told in the past that I exaggerate, make things up, must be wrong about my own experience, am attention-seeking, it is not the way people understand cancer to be so it must be untrue. I had the same thing happen when I talked about the side effects of medication I am on. I generally only write the absolute truth in my blog and am very reluctant to open up in person. People may think they know, but only m’Sooterkin™, parents and twin sister really do. Not only do I not feel I will be believed but I also don’t want to burden them. My mental health is constantly in flux. The conflicting advice I have received is from two Specialists who are both highly regarded in the field. One trained the other, and the other is a leading figure in research into the condition. I left that appointment fearful. I left knowing that I would be shielding until there is a vaccine for the coronavirus that has been taken up by most people in England, and until the pandemic is firmly under control. I left understanding the only reason I would be given treatment would be if the risk of death from CLL was worse than the risk of death from exposure to the virus.
Most people diagnosed with CLL are over 60.
There are a limited number of treatments that can be used with CLL and if you have been treated with one once you cannot be treated with the same treatment again. I was diagnosed at age 42. There is a possibility that if I start treatment now, I will run out of forms of treatment, although it’s hard to know as who knows how long I would return to watch and wait for after the first, second, third or fourth treatment. CLL is incurable, you can go into remission, but you will never be free of it. The leukaemia will be present for the rest of however long my life turns out to be.
I need to keep my employer updated even though I am working at home on reduced hours. I needed to adjust my thinking after this appointment, just to be able to cope with this constant state of unknowing and to try and convey that to those who are supporting me in this. I stopped thinking about treatment being “put off” or “delayed” and am trying to think of it as “pushing back” day by day, week by week, as long as possible until the Specialist decides it cannot be pushed back further. I am being monitored every four weeks.
When one has a chronic condition one is never cured, just maintained. We are fed the line that medical conditions and treatments are linear and chronological. We are diagnosed, we are assessed and treated, we are cured/in remission/dead. In reality that is not the experience of a person with a chronic condition, and it is so difficult to get out of that mindset. Even those of us living with chronic conditions find our minds stuck in that mentality. The ideal of the model of an illness or condition is based on an acute experience, not chronic. We do not learn about neither are we taught to understand a chronic condition, or dis-ability.
The experience of a chronic condition needs to be a fundamental part of our understanding of how the medical model may be applied to treating people. Chronic conditions need to be understood in a holistic context, as they affect far more than merely the condition may suggest. Mental health is tied directly into living with a chronic condition. At present, the way in which society addresses chronic conditions is counterproductive. I have lost friends who do not understand chronic and would rather label me a liar than try to understand or even give me the benefit of the doubt as someone who has lived with chronic conditions for 37 years and counting. Thankfully, the vast majority are incredibly supportive, and even if they don’t understand they don’t judge or mistrust me.
I am left confused, hurt and triggered into my clinical depression again. I understand why. I know that needs to change. In the meantime, all I can do is adjust my own way of thinking and hope others do the same.
fromthemindoftinapj 